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Help! Gluten Free - Not Working!

PunkyBean

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PunkyBean Newbie
PunkyBean
Posted

I was diagnose with Celiac (by biopsy) in December and went gluten free on the first of the year. When I was diagnosed I was having stomach pains - that's it. After going gluten free the pains seemed to stop and all was good. Then I ate at PF Changs and got glutened. :( major DH. About five days later it happened again. The DH has not gone away - it has been a couple of weeks. I've since eliminated dairy too. It just seems to be non-stop. Every morning... and everyhing I'm eating is for sure gluten free. Doubtful that there are any cross issues either (I'm beyond paranoid after PF Changs.)

Some people have told me it's just the gluten leaving my system and it takes a long time, but how could that be? Does anyone else have these issues?

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shopgirl Contributor
shopgirl
Posted

As I understand it, it can take months and sometimes years for DH to go away in some people and that's with careful limitation/avoidance of iodine and certain kinds of fish

gary'sgirl Explorer
gary'sgirl
Posted

My daughter get's DH from the smallest trace amounts of gluten. Until just recently (she has been gluten free for a little over a year), whenever she would have a breakout from CC, it would continue to get worse for 1-2 weeks and would not start to clear up for at least six weeks. I think it would stick around for up to three months at first.

We started the Specific Carbohydrate Diet in Sept. and it seems that since that time when she does have a reaction it has been lasting less and less time. I just realized that over that last couple of weeks she has broken out twice, but it has been much less severe and started to get better after just a few days and one time was completely cleared up within a week.

I don't know if that helps any, but it might take more time for your body to heal and it might not hurt to look into the SCD diet or Gaps diet if you don't see better recovery after a while. - I know that we didn't start to recover very well until doing the SCD.

Hope you can find some good help soon!

katrina500 Rookie
katrina500
Posted

My daughter get's DH from the smallest trace amounts of gluten. Until just recently (she has been gluten free for a little over a year), whenever she would have a breakout from CC, it would continue to get worse for 1-2 weeks and would not start to clear up for at least six weeks. I think it would stick around for up to three months at first.

We started the Specific Carbohydrate Diet in Sept. and it seems that since that time when she does have a reaction it has been lasting less and less time. I just realized that over that last couple of weeks she has broken out twice, but it has been much less severe and started to get better after just a few days and one time was completely cleared up within a week.

I don't know if that helps any, but it might take more time for your body to heal and it might not hurt to look into the SCD diet or Gaps diet if you don't see better recovery after a while. - I know that we didn't start to recover very well until doing the SCD.

Hope you can find some good help soon!

Hello, I don't have DH, my celiac symptoms were all neurological with some stomach pains. I went for two months on just plain food; rice, chicen, meat, vegetables. Then I felt I was doing great and started eating processed food which was marked as gluten free and I've been really ill again. I think just try really plain, completely unprocessed food and see how that works. It takes longer to prepare meals of course, and a wee bit of a bind when one works away from home, but I'm sure that's the way to sort out the system. Hope you feel good soon.

Melati Newbie
Melati
Posted

Just something for you all to think about or look into if you're still having trouble on the gluten-free diet. Try googling Elaine Gotschall, Dr. Haas, and/or the Specific Carbohydrate Diet. Original research showed the celiac problem to be caused by certain sugars/carbs. This thinking has since been replaced by the modern thinking that it's just a gluten-intolerance problem. But why is it that people on a gluten-free diet never actually "heal" totally? Some (I don't know what percent) feel symptom free most of the time and maybe only have an occasional flare-up. But a biopsy will still show damaged intestinal walls. Others continue to be plagued with ongoing issues.

My husband is celiac and has been on a gluten-free diet for 15 years, but he still suffers from IBS and has other celiac-disease health problems. My daughter has been on a strict gluten-free diet for a little over 2 years. She had an initial good response, but soon had all her symptoms back and she has continued to go downhill. She is a wreck physically. We finally found a doctor last month who was able to diagnose the problem: refractory celiac disease, where the gluten-free "fails". Interesting!

Both are now on the Specific Carbohydrate Diet. We have JUST STARTED and I'm looking for anyone else out there who may have some experience and could maybe answer some questions for me. Thanks!

Melati

gary'sgirl Explorer
gary'sgirl
Posted

Just something for you all to think about or look into if you're still having trouble on the gluten-free diet. Try googling Elaine Gotschall, Dr. Haas, and/or the Specific Carbohydrate Diet. Original research showed the celiac problem to be caused by certain sugars/carbs. This thinking has since been replaced by the modern thinking that it's just a gluten-intolerance problem. But why is it that people on a gluten-free diet never actually "heal" totally? Some (I don't know what percent) feel symptom free most of the time and maybe only have an occasional flare-up. But a biopsy will still show damaged intestinal walls. Others continue to be plagued with ongoing issues.

My husband is celiac and has been on a gluten-free diet for 15 years, but he still suffers from IBS and has other celiac-disease health problems. My daughter has been on a strict gluten-free diet for a little over 2 years. She had an initial good response, but soon had all her symptoms back and she has continued to go downhill. She is a wreck physically. We finally found a doctor last month who was able to diagnose the problem: refractory celiac disease, where the gluten-free "fails". Interesting!

Both are now on the Specific Carbohydrate Diet. We have JUST STARTED and I'm looking for anyone else out there who may have some experience and could maybe answer some questions for me. Thanks!

Melati

Hi, Melati!

I wouldn't consider myself an expert by any means, but my family and i have been doing the SCD for about five months now - almost six. I would love to answer any questions that I can, and I would also love to be in touch with another Celiac family that is on the SCD - there aren't very many. I find that most people on the SCD are treating other intestinal illnesses like chrones or colitis, and I think that it ends up being a little different for us Celiacs.

Melati Newbie
Melati
Posted

Hi, Melati!

I wouldn't consider myself an expert by any means, but my family and i have been doing the SCD for about five months now - almost six. I would love to answer any questions that I can, and I would also love to be in touch with another Celiac family that is on the SCD - there aren't very many. I find that most people on the SCD are treating other intestinal illnesses like chrones or colitis, and I think that it ends up being a little different for us Celiacs.

Hello and thank you! After posting on this link I started a new thread called Specific Carbohydrate Diet, and I've got a few questions there. Maybe you can reply to me there. It's great to meet someone else who is doing this and is finding it somewhat helpful. I get so frustrated with all the conflicting opinions - makes it hard to know what to believe. But we have just invested in a yogurt maker and other things for this diet, and want to give it a fair trial. Bottom line, we just want to see our daughter get well.

Thanks! You can always email me too. (I think. How does that work on here?)

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    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

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      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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